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A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016

Discussion in 'Phoenix Rising Articles' started by Mark, Jun 14, 2016.

  1. Kati

    Kati Patient in training

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    Invest in ME's revenue relies on sales of DVD. SOmeone managed to post the videos online one year which did not please the conference organizers.

    There are costs associated with organizing an international conference. Room rental alone/catering the technical crew (A/V, filming) it's all a lot of money.

    Buy the DVD. Support the conference. Don't post the video content online (it's copyrighted) It's a win win situation.
     
    Mark, ukxmrv, Ritto and 2 others like this.
  2. M Paine

    M Paine Senior Member

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    The idea that the DVD's generate revenue, while being heavily subsidized just doesn't make sense.
     
    Hutan likes this.
  3. taniaaust1

    taniaaust1 Senior Member

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    many of us wouldnt buy them at all myself included, I have brought these ones before... if they werent cheap enough for us to do so due to being on disabilty pensions (the profit still goes back to them)
     
  4. AndyPR

    AndyPR Senior Member

    I believe the point is actually whether the conference footage is available to download/stream for a fee, not whether a pirated version is available for free.

    Personally, I ordered the DVDs last week, but I can understand how having them available in a digital format would make them more widely accessible to more people - equally, from the IiME side of things, it would be another task to add to what is probably a long to-do list already, and either they haven't thought of it before or they just don't have a volunteer to take the task on.
     
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  5. Simon

    Simon

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    Professor Elisa Oltra (Valencia), microRNAs

    Just thought it's worth explaining a little bit more about microRNAs, miRNA, partly for my own benefit. It's a new a rapidly expanding area of research. These small molecules (usually 22 nucleotides long) were only discovered in 1993, and reseach on them only really got going since 2000. They play a critical role in regulating gene expression by stopping messenger RNA, mRNA being translated into proteins. Just to recap:
    genes == transcription ==> mRNA === translation ==> proteins

    miRNA bind to mRNAs and either cause them to get broken down faster, or stop them being translated to proteins: either way the results is less protein is made from the same amount of mRNA.

    While mRNA is very unstable, these small miRNA molecules are very stable and occur in most body fluids, making them good potential biomarkers.

    Did she say which diseases? I did a quick google (yeah, flakey or what) and couldn't find anything specific on a disease, though lots of signs of activity trying to find biomarkers, including this published in January
    MicroRNA as Biomarkers and Diagnostics -

    Worth noting that FM/CFS study had only 11 patients vs 10 controls, but great that they are looking to validate the findings - that's the crtical step that's been left out in so many earlier biomarker studies.

    Fingers crossed for this one.
     
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  6. AndyPR

    AndyPR Senior Member

    My reply from IiME;
    So, they have been asked about it before but at the moment they won't be offering it.

    Just looking on the DVD order page (http://www.investinme.eu/iimec11.shtml#dvd), they certainly keep the shipping costs as low as possible, in the UK the DVD costs £14, Europe is £15, and the rest of the world is £17.
     
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  7. Bob

    Bob

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    Everyone is grateful for the current arrangements. We were just wondering why they don't place the videos on, for example, Vimeo, for a fee. (Forgotten plague is available on Vimeo.) Streaming is very popular these days, and easily accessible. But it's not a big deal; it's just a question, which has now been answered above. I hope IiME do consider placing a copy of their DVDs onto Vimeo in the future, unless it would cause a disproportionate amount of extra work for them.
     
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  8. alex3619

    alex3619 Senior Member

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    It was being debated in the biosciences faculties in 2000 at my university. People (lecturers) were talking about looking forward to conferences where findings were being presented.
     
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  9. msf

    msf Senior Member

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    Prof. Edwards just mentioned in another thread that ´one of the European researchers) at the IiME conference had a slide showing no difference between patients and controls for several pathogens, including Borrelia, Bartonella, Herpes viruses and Coxsackie. Did anyone else see this or hear anything about it? There are only two European (rather than UK) researchers listed above, where there others there who only presented information without giving talks? I do not want to bring the Lyme, Herpes, or any other controversy to this thread, I will just say, ´uhuh, I see, interesting´ in response to whatever I am told.
     
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  10. msf

    msf Senior Member

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    Bump.
     
  11. MEMum

    MEMum Senior Member

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    My son's X-Box is the only way we can watch DVDs in our house. Two laptops have non-functioning DVD players.
    None of the computer stuff is very new....
     
    Bob likes this.
  12. MEMum

    MEMum Senior Member

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    My notes did not include the names of other 'complex diseaeses', but I had written down 1990 American College of Rheumatology nearby. So I Googled something like microRNAs in diagnosis of rheumatoid arthritis and came up with this link to a Japanese paper, there are probably others too
    http://arthritis-research.biomedcentral.com/articles/10.1186/ar3013
    Professor Oltri mentioned Japan, but I thought this was re where the micro array machine they use, is from.

    Also @msf I cannot find ref to that slide in my notes re Borrelia etc. Prof Edwards may have seen it at the pre conference colloquium, or I may have missed it. However my daughter had a tick bite, with EM rash last summer and has now got IgM to Borrelia so I would prob have noticed it.
     
    Mark likes this.
  13. msf

    msf Senior Member

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    Thanks for the reply, MEMum.
     
    MEMum likes this.
  14. BurnA

    BurnA Senior Member

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    Subsidisation is used to cover part of costs generally, but not necessarily all costs. And revenue is just income, not necessarily profit. So its perfectly natural to charge for something that is being subsidised, in order to break even.

    My impression is iime are not the most up to date technology wise, but i am willing to overlook that, given that they are the most up to date, research wise.
     
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  15. msf

    msf Senior Member

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    I mean, uhuh, I see, interesting...
     
  16. Mark

    Mark Former CEO

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    Thanks Simon, and thanks for the brief analysis of the KDM study. I remember now that it was really no more than preliminary, because of sample size amongst other factors, but I did find the concept interesting at the time and thought it was good to see a start on this kind of analysis. In the context of the question I was originally asked, I suppose my response would be that actually this particular study has now been followed up by Hanson and others, with what look like more robust studies, but we're still in the early stages of this area of study, in general and not just in ME/CFS. And really it's not particularly a follow-up as such because a lot of people were interested in studying the microbiome anyway. Also it does seem to me that it's good news that Hanson's finding is consistent with what KDM's results showed, but time will tell whether the other results KDM reported then will be borne out or not - as Simon points out, with a small study like this there's just not enough data to answer that yet.
     
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  17. Mark

    Mark Former CEO

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    Quite possibly she did mention diseases in which they have been useful as validated biomarkers, but I'm afraid there's nothing in my notes about that - sorry.

    Yes, this did seem very preliminary, very early stage, but hopefully attending IiME and networking with others will help Oltra to progress this research.
     
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  18. Mark

    Mark Former CEO

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    I'm not sure, but this sounds like it might have been a slide from Mady Hornig's presentation (not European, I know); it would seem to fit because I think that group did begin with a trawl for just those kind of pathogens. I can't think of anything else that fits the bill, but perhaps Jonathan was referring to something from the research collective meetings ahead of the conference.
     
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  19. msf

    msf Senior Member

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    The Hanson study is practically the same size as the KDM study, and although the KDM patients were split between Norway and Belgium, we don´t know whether say, the Hanson one recruited from both the East and West coast of America, or whether it included different ethnic groups, all of which might affect diet and therefore the microbiome.
     
    MEMum likes this.
  20. duncan

    duncan Senior Member

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    I, too, was interested in what @Jonathan Edwards had to say. I thought he wrote something to the effect that it was claimed at the conference that many viruses and bacteria (e.g., Bb, Herpes, coxsackie etc. ) were shown not to cause ME/CFS - but admittedly I may have that wrong - my memory is frequently in shambles.

    If anyone can clarify, that would be great.
     
    MEMum likes this.

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